Originally Posted by Littlepaw

Hi Lessa,

I am sorry to you are worsening and having to wait to get care. I am also a little concerned about what you might be walking around on. I remember you said MRI would take a million years, but did you ever have imaging of any kind, even an Xray? You said the sprain was off from the beginning...if it didn't heal or you got something like a stress fracture at the same time that will make a difference in your care plan. Pretty hard to get out of CRPS with unaddressed pain contributors...

I don't know financially if going private is something you can consider, but I know many of us have thrown all the resources we could muster at getting help. If you think you could cross the border and get to Seattle you could get private care. I ended up paying for my own MRI twice because it was cheaper that way. Austin prices are not inexpensive but MRI of the ankle and foot to the big toe joint ran only $550. I had to call around as pricing varied up to $1200.
Anyway, it is a thought if you need it....

Also, I am curious if you have tried walking in an Aircast boot? Immobilization is not good for CRPS BUT depending what's going on in there, getting pressure off may help. And you're out of it when not weightbearing. IF you haven't tried it, maybe ask your GP.

To answer some questions...outcome is different for everyone and my walking situation was compounded by surgeries (though I really should've been able to walk and stand within 6-8 weeks) but I went from spending a full year on a scooter with 9 months of that on crutches to walking a mile to 1.5 miles most every day now. It was accomplished through extremely gradual increments starting with going down the driveway. I also had to wean off devices, going from two crutches to one, and some walker use to cane, then nothing. Again, it had to be done slowly.

I had mirror pain in the beginning which I only have on very, very rare occasion these days. I think I have the potential for spread there but getting my pain controlled seemed to stabilize it for the time being. My non-injured foot is now doing great.

On discoloration...oxygenation is a problem. Light compression may be helpful if you can tolerate it. I had to use ACE wrap at first because the socks were uncomfortable.

I personally found tramadol to be helpful for pain. It is not a big gun opiate so GP probably won't mind trying it. It blocks NMDA receptors which is how ketamine works.

Rage, distress, anxiety, bouts of crying....you name it. Most of us have probably felt it at some point. It is really difficult in the beginning. I didn't settle for about a year and half or so. It takes time and support to get through the grieving but it does get easier. Hang in there. There is hope and the potential for healing.

I hope that you get what you need soon. I would imagine there are plenty of treatment options on the U.S. side. If you can pull it off it might be worth your while.

Sending hugs and healing love,